And The Penny Drops…..

A couple of days ago I was reading an interesting blog about Fibromyalgia. As the writer detailed her triggers of the condition, suddenly the light bulb went off.

In December of 2002 after 12 months of renting various properties I bought a house. I didn’t have much in the way of help with the move so did most of the furniture removal myself. It was a long and physically demanding weekend but by the sunday night it was done and myself and Ben who was 11 years old at the time, were happy to be in our own house again.

The following day I woke up with a strange stiffness in my joints. Standing on my feet was quite painful. I thought it was just because I had lifted many heavy boxes and furniture that my body felt so stiff but as the day wore on it got worse. The next morning I had to drive 12 miles to the nearest supermarket. By the time I got there my hands were ceased up from holding the steering wheel. I couldn’t open my fingers.

I walked around the store trying to hold the shopping basket but everything I did was painful. That evening I began to suspect something was really wrong and the next day went to see my Doctor.

I was told it was viral but the Doctor took bloods to check for arthritis. A few days later my symptoms eased, the blood results were negative and I didn’t give it much more thought. That is until September 2004.

After a particularly horrible break-up with my boyfriend I had another attack of this ‘virus’ . I had to stay in bed for 3 days. It felt like my body had shut down, like I had reach my stress limit so my body said , no more, and just stopped working. I don’t know how else to explain it. Aching joints, pains, exhaustion, slight cold/flu symptoms. This time I put two and two together and realised this was a reaction to stress.

My Doctor insisted it was post viral syndrome.

Over the last 10 years I have had various attacks, never as physically debilitating as the first one but exhausting and painful none the less. And always after heightened levels of stress or trauma.

It never occurred to me until recently that this might be fibro but the more I read the more Im convinced. As an IC sufferer I realise that many who have this condition also have Fibromyalgia and all my symptoms fit what others have described. In some way it is actually easier to deal with now, knowing what it is, knowing that it will pass and doing my best to look after myself in the hope these attacks are as infrequent as possible.

I have noticed that these days it feels like a more underlining illness all the time, I never really feel well. My IC is worse now too so maybe the two are linked, if one gets worse so does the other. I have been under financial strain for over six months so my stress levels are constantly raised, this doesn’t help. But now knowing whats wrong will help me deal with it in the future.

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IC : A Better Day

Finally a day with less pain!

Interstitial cystitis has a mind of its own, it makes up the rules and you must follow. You have no choice, no control. 

Two weeks ago my symptoms worsened, for what reason I do not know. I ate the same things, drank only water, took my meds… but the last two weeks have been awful. That is until today!

Finally a day of moderate pain but manageable levels. I rode my horse, played with my son in the garden on a beautiful sunny afternoon and took a short shopping trip to my favourite butchers for some local  free range organic food.  

Will I sleep tonight? Would be lovely to have a good sleep after two weeks of interrupted slumber. It would be the icing on the cake and Im praying this isn’t a blip. To have two good days in a row would really cheer me up!

I have received an appointment with my Consultant in four weeks time. This will be the first time I have seen him since the failed procedure on 28th December 2012. I have mixed feeling about this, on one hand I am really angry that (1) He never explained the possible negative outcomes. (2) He didn’t bother to see me post-op and (3) There was very little post-op follow up. I was left to get on with it basically.

On the other hand, what is the point of seeing him at all?! I know there is nothing more that can be done and I know I’ll just be annoyed the moment I see him, annoyed at his lax attitude to my treatment. There are no other options apart from removing the bladder.

Maybe one day scientists will create a cure or an artificial bladder… who knows! 

I live in hope. 

Equines : And Other Animals

Our family has always had pets of one variety or another. To this day I couldn’t be without my dogs.

Our first family dog was Kimmie a Heinz 57 and she was the loveliest kindest most intelligent dog I ever knew. My love of dogs started with her. Our second was Meg, the super intelligent boarder collie, beautiful brown and white long haired coat. By the end of the 70’s we had a Tory Government and been through various budgies and gold fish. None lasted very long apart from Mrs Thatcher of course although one cat out lived Maggie’s reign. He was acquired when we moved into a rented farmhouse. Seemingly the previous tenants did a moon light flit and the cat got left behind. The Grey and White cat lived for 14 years, we never knew his real age.

Horses are a huge part of my life, the non judgemental, unconditional love has been a constant when the human version has been absent. As a child I turned to horses to feel loved, to find confidence in myself and to feel worthwhile. I still do this to this day.

As I write there is one dog snuggled beside me on the chair, she is Pippa a 1 year old Jack Russell. Such a pretty tri colour, with a beautiful face. She is a source of comfort. Her adoring eyes, well probably cupboard love but she makes me smile. The other dog is snoring loudly on the sofa.

During 2002/2003 I found myself going through a particularly difficult time in my life. My horse then was Intan, a 16.2hh Thoroughbred. I cried into his warm neck many times. He always stood perfectly still, never moved a muscle until Id gathered myself together. He was my rock. My lovely boy is still going strong with is current owner, who will keep him until his last day and that was the only reason I sold her to him.

And now Finlay is my therapy. Finlay the big, silly sod he is at times, looks after me. I rarely feel confident apart from when riding him. I know Im good at it. I think my need to compete is to validate that. To show everyone I can do something right in my life. I don’t know why I feel I need to prove myself, well maybe I do but that conversation is for a therapist of the human variety.

 

IC : Its All An Uphill Struggle

I cant quite remember when life was last on an even keel. The days now merge into one blurred mass of pain, pills and PMT.

Well I say PMT but what really I mean is peri menopausal. Yes, Im on that road now. Oh joy! Normally this would mean mild mood swings, irregular cycle and periodic aches and pains etc But for an IC sufferer like me those ailments are the least of my worries.

For me hormones changes signal increased pain levels. Not only do I feel very emotional my pain levels are horrendous. Add the two together and what do you get? Despair.

Total despair. Ten days ago something triggered my IC from manageable pain levels to crippling all day and all night levels. I don’t know what this trigger was. I didn’t eat anything on the danger list (which is as long as your arm) I didn’t drink anything other than water. I didn’t take any strenuous exercise. So what could it be? Hormones?! I don’t even know why hormones affect IC so badly. My consultant has probably told me but I can’t remember now.

The one thing I have very little control over…. hormones. As I approach my mid forties this can only go one way. What does this mean for an IC sufferer? Well I guess Im about to find out.   

IC : Catheter Chaos

After the failed procedure at the and of last year I find myself at the mercy of the catheter. At first this was a painful tricky business, locating the urethra is not as straightforward for women. In fact most women don’t know where it is! Once located, inserting the catheter is at first very uncomfortable and brought me to tears every time but after a couple of days it did get easier.

The catheters are individually wrapped in sterile foil by squeezing the foil you release a extra sterilising fluid. Once opened the catheter must be inserted promptly and cleanly into the urethra. By cleanly I mean the catheter must not come into contact with anything else as this contaminates it and is unusable.

Once inserted the urine should flow freely.. or so you’d think. Sometimes the catheter becomes stuck to the wall of the bladder and the flow will stop. This makes you think your bladder is empty then half an hour later the pain worsens and its back to the bathroom to go through the whole palaver again.

I felt I had mastered the art of catheterising until last week. One day I found it difficult to push the catheter in, it did go in but was uncomfortable. Later that day I used another one which went in ok so thought nothing more of the original problem. Two days later I wake up feeling really unwell, so much pain. Using the catheter was very sore, not inside the bladder but in the urethra. Was is it just irritation or infection? Who knew! A few hours later I could hardly walk, my bladder felt full and painful and using the C (catheter) was awful!

I had antibiotics in the bathroom so decided on a three day blast to see if that helped. Along with some tramadol and my usual Atarax  …. 5 days later and Im slightly better. The fact that I sat in the saddle today lifted my spirits although I couldn’t really sit on my pelvic bones but by leaning forward slightly I could sit on my horse. I have increased my water intake (this is the only fluid I can actually drink) but that brings its own problems, filling the bladder quickly and increasing that particular pain….. no one said it was simple!

With the onset of the monthly cycle its one pain after another….. Life is a pain but life goes on.

 

IC : Today Has Been…..

 

What’s the word… wretched might describe it. I feel as bad as I did for the month post op. There seems to end to the pain, no end to the use of catheters, no end to this hell.

Is it infection or just irritation? Do I wait another 12 hours or take Amoxicillin now? Should I take painkillers too?

I probably shouldn’t write when I feel so demoralised. There are so many others worse off than me but right now the tears fall. The helpless free fall into the dark pit of pain overcomes me. I fail to see the light…. is there a light? Not even my loyal four legged could lift the burden of pain.

Tomorrow will come, will there be a light  …………